Silent Struggle

There are things i cant say out loud.  Places I can't allow my  brain to go.  There is a  piece missing from my life something I will never have again.  I have been saying I am so much stronger but really I just force myself to pretend I am. Maybe that is strength but I suspect in these situations we do what we have to survive. 

I have been struggling since vacation to get back into the swing of  doctor visits and therapies.  It all takes a toll on our family.  This constant obligation to this disease. As much as we try to act normal we aren't and muscular dystrophy never lets us forget.  Its the 6th family member we didn't ask for.    I am so sad for my little boy for all 3 of my kids.  i cannot explain how much I wish I could shield all of them from this disease. How much I want to shield myself, everyone that loves and cares for us really.

I never realized how much I would wish for autism or downs syndrome or something that would just make him different not something that would slowly rob me of my child.  I get so filled w/ desire to fight this disease but I have no weapon.  I have no miracle drug, no chemo, no anything. Hope, awareness, and fund raising they just aren't enough some days.  I don't mean to say these other disease diagnosis are any less devastating but please don't judge me if you haven't been here just feel damn lucky you aren't.

i am so jealous of my friends even my own mom.  I love all of them but i am different from them.  I don't want them to have to feel what I feel but my God do I wish I could feel the sympathy they feel for me rather then this raw horrible pain that will forever be a part of me.  

I have never felt such an outpouring of love before yet I feel so alone and isolated.  I am so scared to reach out to anyone dealing w/ this because I can't face what this disease will mean for me and my family in the future.  It is so hard to constantly grab at hope but force yourself not to be to hopeful.  I cant  fully believe there is a cure out there because what if they don't find one? 

My child is losing so much.  Its not just his ability to walk, or his eventual loss of life.  It is the simple things he doesn't get to have.  He cant keep up w/ his friends even now.  He will never be the first choice in gym class. He could forget what it was like to walk or spend his adulthood haunted by the years he walked.  I hate this.

I hate hearing about God knowing best and his almighty freaking plan.   seriously I don't give a rats ass what his plan is, I just want my child healthy and I am not willing to sacrifice this because of some plan. My husband and I made this child. We decided everything for him, God doesn't get to slowly kill him to satisfy a plan. I am sorry I just don't get why this plan should comfort me.If this is a plan I refuse to take comfort in that.

Tomorrow I will wake up living this silent struggle.  I will pick out clothes and tell Robbie to quit fooling around because the bus will be here any second.  I will do some laundry. Go to the ophthalmologist to make sure my 5 year old isn't developing cataracts from the steroids.  make lunch and dinner, curl up and watch TV and force myself to stay in the present because the present is the only thing I can believe in.